It’s time for a new update.
First, a few pictures: some of us, some of nature. More at the end.
The Olympic Games in China are the most amazing I have ever seen. You look at top athletes who practiced hard for many years and it all comes down to one competition that determines if they go home or continue.
It’s moving to watch the roller coaster of triumphs, failures, joy, disappointments and surprises.
While watching the games (in some very late hours) it hit me that I feel all of the above. If you recall from my past updates, I compared my struggle to a marathon. Now with the Olympics it is even clearer to me. Just like these wonderful athletes, I experience the roller coaster of a very long treatment: the ups and downs (good and bad medical results), good and not so good days with side effects and the expectations before every milestone.
However, since I really feel that it is a marathon, and a longer one than I ever expected, I try looking forward and get less excited or discouraged from the ups and downs. Since I already broke the record of how seriously I was ill at the start of my treatment, I hope to break another record and this will be the full recovery in spite of this situation.
A month ago I started a new clinical trial. The other treatment was working OK but not doing the job fast enough. The new experimental medication is really bleeding-edge: phase-1 on a handful of patients. I am the 12th and last patient to join these trials and the one with the highest dosage!
The first 2 weeks were quiet hard to say the least. As you say in Hebrew “Al Hapanim”. Coupled with vomiting and some cold it wasn’t something I experienced so far. The key was to get used to the side effects and go on. I found that eating did magic for me. With Shoshy’s good cooking and dedication, coupled with my desired to eat all the time, my situation gradually improved and I even gained 2 Kg for the first time in years. Eating when you feel like throwing up is counter intuitive (except if you are a mariner!). Yet, I found this to be the best solution. And so, after 2-3 weeks life returned to the ‘normal’ routine.
I am starting to cope with other side effects, the most noticeable one is pain in the tip of my hand fingers. This is a well known result of the long treatment with Velcade.
So far it comes and goes. All I need is two healthy fingers to continue typing…
Before every treatment, which is now twice a week, I go through a series of blood tests, based on which the doctors decide on the specific treatment on that day. There are all sorts of variations in the battle to protect other systems in the body (kidney, liver, etc.) while treating the main problem. However, there are certain go/no-go criteria for the treatment and one of them is minimum level of Sodium. In my last update I told you about how I drink a lot of V8 two days before each treatment. This loads my body with enough Sodium to pass the required threshold (since my Sodium is very low).
Well, I found a more efficient way to deal with the problem. On the morning of the treatment I eat two slices of bread with a few herrings, plus one big can of V8. It works!
Summer has been quiet and not too hot, thanks God. The house is a mess. We started a few renovations 2 months ago and we hope to finish them soon. Without a kitchen we are like gypsies.
I enjoy having the family around and their support. From time to time we take a walk and go see something interesting, like the annual sand castles contest on the beach (see the pictures).
To summarize: so far so good. I feel like a driver shifting gear and I hope that the new treatment will work well. It has to. In a month I'll know more and hope to continue the positive direction.
Yours, always optimistic,
Guy
It’s moving to watch the roller coaster of triumphs, failures, joy, disappointments and surprises.
While watching the games (in some very late hours) it hit me that I feel all of the above. If you recall from my past updates, I compared my struggle to a marathon. Now with the Olympics it is even clearer to me. Just like these wonderful athletes, I experience the roller coaster of a very long treatment: the ups and downs (good and bad medical results), good and not so good days with side effects and the expectations before every milestone.
However, since I really feel that it is a marathon, and a longer one than I ever expected, I try looking forward and get less excited or discouraged from the ups and downs. Since I already broke the record of how seriously I was ill at the start of my treatment, I hope to break another record and this will be the full recovery in spite of this situation.
A month ago I started a new clinical trial. The other treatment was working OK but not doing the job fast enough. The new experimental medication is really bleeding-edge: phase-1 on a handful of patients. I am the 12th and last patient to join these trials and the one with the highest dosage!
The first 2 weeks were quiet hard to say the least. As you say in Hebrew “Al Hapanim”. Coupled with vomiting and some cold it wasn’t something I experienced so far. The key was to get used to the side effects and go on. I found that eating did magic for me. With Shoshy’s good cooking and dedication, coupled with my desired to eat all the time, my situation gradually improved and I even gained 2 Kg for the first time in years. Eating when you feel like throwing up is counter intuitive (except if you are a mariner!). Yet, I found this to be the best solution. And so, after 2-3 weeks life returned to the ‘normal’ routine.
I am starting to cope with other side effects, the most noticeable one is pain in the tip of my hand fingers. This is a well known result of the long treatment with Velcade.
So far it comes and goes. All I need is two healthy fingers to continue typing…
Before every treatment, which is now twice a week, I go through a series of blood tests, based on which the doctors decide on the specific treatment on that day. There are all sorts of variations in the battle to protect other systems in the body (kidney, liver, etc.) while treating the main problem. However, there are certain go/no-go criteria for the treatment and one of them is minimum level of Sodium. In my last update I told you about how I drink a lot of V8 two days before each treatment. This loads my body with enough Sodium to pass the required threshold (since my Sodium is very low).
Well, I found a more efficient way to deal with the problem. On the morning of the treatment I eat two slices of bread with a few herrings, plus one big can of V8. It works!
Summer has been quiet and not too hot, thanks God. The house is a mess. We started a few renovations 2 months ago and we hope to finish them soon. Without a kitchen we are like gypsies.
I enjoy having the family around and their support. From time to time we take a walk and go see something interesting, like the annual sand castles contest on the beach (see the pictures).
To summarize: so far so good. I feel like a driver shifting gear and I hope that the new treatment will work well. It has to. In a month I'll know more and hope to continue the positive direction.
Yours, always optimistic,
Guy
